Its been a tough two weeks for Kathleen. More pain meds… New pain meds… New doses of pain meds. Pain Crisis… Common word, pain. She pretty well has to use the wheel chair full time as standing or walking around is too painful and just wipes her out.

She did have one amazing night out on the previous Wednesday. Kathleen is part of a local service club (Zonta International). She joined it a few years ago because she wanted to give back to her community, but not just locally as she liked the international aspect of it as well. She also respected very much the way the work was done and how dedicated and committed the women were. When she got sick last year, she had to give up her participation with the group, but the group certainly did not give up on her. Throughout, the women of Zonta have continued to reach out to Kathleen and its been such a sustained source of support for both of us. All the phone calls, visits, flowers, cards, emails, blog comments add up to such a foundation of support. So, it was an emotional night for her, to say the least, when she attended her first meeting since her initial diagnosis.

It seems the pain free moments are fewer and fewer for her and there have been some awful moments. Her primary pain med is via sub cue and it tends to get blown faster than it should. When that happens, the pain meds just accumulate in the tissue un-absorbed and she gets in a world of pain like Wed night. Changed the site. Fixed for now.

I haven’t been posting too much lately. In some ways, “nothing new to say.” Things are just hard. Our friend Jan is here still and that is an indescribably huge help. But she does not have the magic cancer-be-gone wand either. So its more of the same for Kathleen.

Chemo day today and back to the chemo cave. It almost didn’t happen as her platelet count was 58 yesterday. Had to re-do the test today. 76. 75 is the cut off and even that is a pushed value. Its hard to look for the light in the cave. But the love and support that our friends and families give us certainly are a huge help in finding those moments. ‘Thank you’ seems so inadequate, but thank you.

Some pics from the last 14 days.

In front of the Apple Tree

Enjoying the hot weather on the long weekend

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Wonderful brunch with Jan, Elaine, Bonnie and Don

Photo 2013-05-23 12 23 54 PMShoes of love 🙂

qbay-001Visting in Q-Bay on Chemo Day


Hammer Time

As in after “Break Time”, not the parachute pants wearing MC. (Yes, age specific allusion). Time to hammer her system with chemo once again. She is anxious to get back as she feels she has made gains against the cancer sites with the last CT report. Although Kathleen does not regret taking a week off, she doesn’t want to delay any more. Its a difficult decision to make. You have to balance off between killing your whole body with toxic chemicals and giving it all a break. But you cant be selective about what gets the break and what gets the toxic soup. The cancer cells also get a chance to regroup with time off.

Its been a bit of tough week for Kathleen on the pain front. It has not been under control really. We had a meeting with “Team Pain” yesterday. They really are quite earnest in their efforts to help Kathleen try and control her pain and symptoms. The doctor we meet with takes great care to explain to us the reasoning behind his plan of action. I appreciate how he takes the time to make his case to us where some doctors might say, “take these pills, see you next time”, he takes the time to elaborate his thought process in great detail as compared to some doctors we have dealt with. But, the limits of science and medicine are the limits and they can only do so much. Plus, its treating the symptoms, not the elusive cause. She has been on a new pain med, lyrica. Hard to tell if its working. Its not solving the issue of course, but you cant tell if it would be worse without it. Unless we had a control Kathleen (a double entendre there– ‘control’ and ‘kathleen’), we cant tell how effective it is. Its quite possible she would not be able to function without it, or it makes no difference at all. Hard to say.


You can see from the pic she is pretty tired, but the amazing dinner and desert Jan and Elaine made really cheered her up. Sleep has been hard to come by for her at night. A series of unfortunate events as well has kept her up. Two nights ago, a neighbor’s car alarm kept going off through the night. I went out to check, the poor guy was in his housecoat trying to pull various wires without luck. Add some early morning emergency gravols for nasty cramps and near vomiting and it has made for a long week for both of us.

So here we are again, in “Q” bay.
Photo 2013-05-10 2 56 43 PM
You can see the effects of the lyrica and the new type of subcue ports on her arm with the bruising. More side effects to the side effects to consider.

And now back in the chemo cave with her guardian cat


Chemo Holiday

Pain is much better under control this afternoon and feeling mobile enough to go out for a coffee with Jan at the Nougat.  Always a perfect place to enjoy a fine black coffee (me, Jan) and tea (kathleen).  Thanks to Jan for taking this photo!


Break Time

Couldnt do the chemo today. Platelets were too low and Kath still has not recovered from the previous cycle. The doctor actually was going to allow her to go ahead as it was borderline, but she chose not to. I think it was a good idea. The back pain is still out of control…. Bloody nose, sporadic fever for the last 2 days… Way too much going on to get beat back again with the FOLFIRI into the chemo cave. Will try again next week after she hopefully can recover from the previous cycle.


We had to wait around a few hrs for cathflo to unclog her PICC line again today. (Its funny, I always hear it as Kath flow). So nice to be out in the sun. We are lucky to have our friend Jan with us again


Looking Up and Looking Down the Road

It was generally a positive meeting with the doctor to review the results of the CT scan. He didnt think the spots on her pelvic bone were mets. Just a denser area for whatever reason. Thats good news… But the bad news is no quick fix to her terrible pains via radiation. Instead, more drugs (Lyrica) to try and treat the symptoms. The 4 mets in her lungs have shrunk to the point where they were not visible on the CT, but the doctor wanted to make it clear, they are almost certainly still there. Shrunk, but still there like some cruel sword of Damocles that will follow her around for the rest of her life. Its odd how we all have such a sword over us. But until you look up to see it, you live in blissful unawareness. But once you see it, you can never forget it is there. So, the sixty four thousand dollar question is of course, what does it mean. For now, its stay the course. The Doctor wants to do 6 more chemo cycles, and then Kathleen can take a break. And by break, he means just that. CT scan 2 months from now and then 2 months after that. If things remain small, then another 2 month reprieve. If not, back on chemo. Repeat– more life in the chemo cave.

In some ways, today felt like snatching defeat out of the jaws of victory for her. “We won this round!!! … Wait, what exactly did she win?” She was generally pumped up at the prospect of a positive report, but instead the meeting got refocused in a way she didnt quite expect– talking about the long term. It seems like its been so long since we thought about anything long term and looking down that road is frankly quite scary for her, for us. We know we are on that long cancer road / cancer support road, but frankly, you kind of get used to trudging along, looking at your shoes as you move forward with the odd glance to the left and right of you when the scenery warrants. But raising your head and looking down the road ? Thats a “holy shit, how the hell am I going to do that?!?” reaction. This has been a particularly hard cycle for Kathleen, and the prospect of doing this for the rest of her life is a bitter pill to swallow to say the least. “One day at a time” flips back and forth between infuriating trite cliche and mind saving mantra. As her friend, I dont know the answer. I dont know how to help her through this part of the road, nor does she know how to help herself either. But then again, these are heavy philosophical questions that are meant to be constantly asked, never to be answered with finality.

Chemo day tomorrow potentially. But I dont think it will happen. Kath just doesnt have the physical strength to do it right now. My guess is it will be delayed a bit to let her recover.